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I need advice I need advice

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  #1  
Unread 07-22-2004, 07:29 AM
I need advice

Hello,

I need some advice I had the misfortune of discovering a small lump on my abdomen and then three weeks later it inlarged to the point where it looked as if I was pregnant and then I went to the doctor and I wasnt pregnant. They did an ultrasound and found a "large complex mass" with cystic fluid and a hard mass. It measured 17*8.5*9 cm.Then I had to go to the hospital. They examined me and told me the mass was so large it was as if I was 4 1/2 months pregnant. Then I had to have three blood test. A week later they found that they pregnancy blood test was negative and the CA-125 was higher than normal. They wanted to do surgery as soon one problem was the fact that I don not have insurance my job doesnt offer any. So after fighting:hair: with social workers I have finally found a solution allthough I will have to pay a couple of thousand dollars for everything at least I can have the surgery. I gues what will happen is I will have a vertical laporotomy two weeks from now. They want to take the mass out intact and do a biopsy or whatever they do and they will also be taking whichever ovary it is coming from(the mass is so large they cant tell which ovary). I had to sign a consent form stating that they will try to save me from getting a hysterectomy but if need be they have no choice . They told me if they do that they will give me hormone therapy. If its cancer they will still remove the mass but will have an gynecologist/oncologist do anything further and I will have to have chemo. I am scared because I am only 19 and I want to have children and I am really stressed because I have to fight with people to be able to afford surgey and at any minute the mass could cause an infection on any of the surrounding organs and the mass could strangle my fallopin tube. I am trying to stay calm and think that god has a plan and if I cant have kids then I can always put all of my time into fostering and rescueing animals
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  #2  
Unread 07-22-2004, 03:52 PM
I need advice

I understand what you are feeling. It is scary.

I am 36, single, with no children. I was diagnosed with ovarian cancer last September. Last summer I had wt gain and heartburn (symptoms of ovarian cancer). I felt a mass in my abdomen last September. I saw my primary MD, had CT scan (mass similiar in size to yours), and CA-125 (209). I saw a GYN oncologist 9/18. She told me that I would need to have a TAH/BSO if it was ovarian cancer. She went on to say that I could have a borderline tumor-which means that it is low potential for cancer, but that cancer could occur in future. She recommended a TAH/BSO if I had a borderline tumor. I agreed. biopsy during surgery showed borderline ovarian tumor so I had a TAH/BSO. But the final pathology report showed Stage 3a (advanced ovarian cancer). If I had not had the TAH/BSO, I would have had to go back to surgery to have this done. I had 8 treatments of chemotherapy and now am in remission.

Research shows that women with ovarian cancer who have surgery by a GYN oncologist have a longer survival rate. I would recommend seeing a GYN oncolgist now. Since you do not have insurance, ask to set up a payment plan to pay a set amt per month in the future. You are worth it! If you have ovarian cancer, you will be glad you did this!

A friend of mine really needed knee replacements for both knees. He was in severe pain-could not work-could not walk very far. MDs said he was "too young"(in his 40's). They said that because a knee replacement only "lasts" about 10 yrs-so he would have to have it done several times in future-which would be technically difficult for surgeon to do. He found a MD to do a partial knee re-placement in both knees. His insurance would not pay for it. He told the hospital and surgeon this. He set up a payment plan with MD and hospital and was prepared to pay a set amt each month;forever if necessary. After surgery, his insurance company decided to pay for surgery. He is now back to work and his normal activities.

Good luck! Let us know how you are.

Stephanie
  #3  
Unread 07-22-2004, 09:07 PM
I need advice

Thank you loves panda,

I am very glad for everyones support and advice. You are right that my health diffently goes above money. I do have a question from what I have been reading it sounds as if a high CA-125 level may mean cancer,endo, or an infection. So it may just mean that is an infection. When you had your mass did you stop menstarting I havent and am 2 weeks behind. It could be I am stressed or that mabye I just did not ovulate. Now that my mass is so big it doesnt hurt anymore I remember a few weeks until I noticed I was having bad cramps so bad I would wake up in the middle of the night and take a shower because the heat of the water made it relax and I was really sick vomitting(I thought I had a bladder infection until I went to the docotrs and my urine test came back negative for infection) I am sorry for writting your ear off, hahaha. But any feedback you have is great

Thanks,
Solstice19
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  #4  
Unread 07-22-2004, 09:25 PM
I need advice

No, my periods did not stop. And the periods were normal.

Yes, an elevated CA-125 can be from endometriosis or stress. But I do not believe that endometriosis causes a large mass.

The mass that I had did not cause pain all of the time.

You have a large mass. I would definitely push for a GYN oncologist to do your surgery. Is there a teaching hospital or hospital associated with a university in your state? A teaching hospital would most likely have a GYN oncologist and would also be helpful to you financially (they may have special fund for patients without insurance). Teaching hospitals also have social workers.

Also, did you ask the social worker if you qualify for Medicaid ?(health insurance for people who make below a certain salary-this amout varies from state to state). Do you qualify for any children's programs since you are under age 21? If you don't qualify for Medicaid now, you may qualify in the future when you are off work recovering from surgery. Another idea I had is that the American Cancer Society may be able to help you financially-they have a toll free #plus many cities have local offices.

Good luck!
Stephanie

Stephanie
  #5  
Unread 07-23-2004, 05:29 AM
I need advice



Since you were getting so much support in the Introduce Yourself forum, I've moved your thread here to Cancer Concerns which is the more appropriate place for this support.

s
  #6  
Unread 07-23-2004, 09:38 AM
I need advice

Earlier I wrote you the following reply under a post from Nancy:

07-23-2004 01:02 AM

Hi Solstice

I agree, trust your doctor, but only if you are seeing a gyn oncologist. They are the experts with all gyn cancers, but it is particularly important when dealing with a possible ovarian cancer.
If your ca 125 is elevated, and your cyst is described as complex, the very best thing you could do is to consult with a gyn oncologist.
Only a gyn oncologist is qualified to perform the necessary surgery for ovarian cancer. NOT an ob/gyn!!!!
Here is a link to a Johns Hopkins web site that you should read.
Best wishes.

Scroll down the center of this link and for the area titled the Two Biggest Decisions to Make when facing possible ovarian cancer.

http://ovariancancer.jhmi.edu/#

oxox karenann


__________________
karenann
5/31/01 tahbso debulking for ovca stage IIIc
If a gyn cancer is suspected, please consult with a gyn oncologist!!!!

After reading your above post, I wanted to give some further advice. Have the social worker or case manager directing your care read the article from Johns Hopkins Univ. Then inform them you will actually be saving them money if they allow the proper surgeon to perform the very first surgery.
I am so sorry you are in this insurance quandry.
Too many people living in this country are finding themselves in a similar situation. I hope we all remember to vote this November.
Somethings needs to change.
Best wishes to you again.

oxox karenann
  #7  
Unread 07-23-2004, 11:36 AM
I need advice

Dear Karenann,

When I was talking with the doctor who will be doing my surgery she said that if I wanted to go to a gyn oncologist I could(they dont have one at that hospital). She told me that all they were going to do is take the mass out and then send it out for tests if anything looks or test malignant they will then send me to the oncologist for anything further and then I will have my insurance through the state by that time. But she also said that if it was neccesary they would give me a hysterectomy. It makes me uncomfortable that someone who doesnt specialize in this is doing my surgery and basically has my future and health in her hands. The reassuring thing is that the doctor I originally wanted for surgery(but didnt want to wait a month for) is also going to be operating too. I am going to go through some things and see what my options are. I will look at the website you have provided. I am going to see if by chance I could go to a different hospital, one that has a gyn oncologist on staff.

Thank you,
solstice
  #8  
Unread 07-23-2004, 11:50 AM
I need advice

Karenann,
I looked through the John Hopkins website. It was amazing I looked at symptoms and wowww. I have every symptom listed for at least a year know it just stopped when my large mass grew otherwise I was always tired,my back hurt constantly, and I was alsways bloated I thought it was because I was constipated and my frequent urination made me think I had an ongoing bladder infection because I was always sick to my stomach. With all of these problems I wasnt a happy person and my boyfriend and I of three years where very strained he though I didnt love him because I was cranky and intimacy hurt so bad I just thought the pain causing that was my debilitating periods.
Solstice
  #9  
Unread 07-23-2004, 12:53 PM
I need advice

(((Solstice)))

I'm so sorry you have to go thru this, and at such a tender young age. Just about breaks my heart !


Do you have family support with you?I hope you arent' going thru this alone.

Hang in there, kiddo! I'll be praying for you!
  #10  
Unread 07-23-2004, 02:41 PM
I need advice

Hi Solstice

I too am so sorry you are having to deal with this at your age!

You will get through it regardless of the diagnosis, we will always be here to listen and support you.

Please listen to the other ladies when they tell you to make sure a gyn/onc performs your surgery. They are specially trained for these types of procedures, especially ovarian masses.

I went thru the same dilemma as you just a few short weeks ago....please keep us posted on your progress......we will be thinking of you
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